Ice Bucket Challenge funding leads to ALS gene discovery

No matter how you felt about the “Ice Bucket Challenge” when it took over the internet in 2014, the meme is actually getting results, according to the main charity that benefited from the campaign.

With the millions raised for amyo­trophic lateral sclerosis research from the viral stunt, the ALS Association said it was able to fund research that identified a new gene, NEK1, that contributes to the disease, the nonprofit announced this week. The breakthrough is the subject of a paper published in Nature Genetics.

The Ice Bucket Challenge was fundraising-as-meme. Taylor Swift, Lebron James, Oprah Winfrey and Bill Gates were among the parade of celebrities who did it.

Some worried that the campaign wouldn’t actually “raise awareness,” because the disease seemed to be secondary to watching the spectacle of a bunch of people volunteering for temporary misery. Or, that all those ice bucket champions wouldn’t actually follow through with the donations they promised.

But the campaign still raised a ton of money to fund research.

The viral campaign raised more than $115 million for the ALS Association alone, in order to fund research into new treatments for the disease. ALS is also known as Lou Gehrig’s disease, a progressive neurological condition that causes muscle weakness and atrophy from the deterioration of nerve cells in the brain and spinal cord. The disease has no cure, and it is always fatal, often within less than a decade of diagnosis.

The gene discovery isn’t even the only breakthrough for which the Ice Bucket Challenge is getting partial credit: Last August — a year after the challenge went viral — scientists at Johns Hopkins said that the money raised from the campaign had a big effect on their work.

“Without it, we wouldn’t have been able to come out with the studies as quickly as we did,” said lead researcher Philip Wong, a professor at Johns Hopkins.

According to CNN, the ALS Association planned to spend $77 million of the $115 million raised through the challenge on research projects like the one that led to this particular discovery. The project in question, Project MinE, received just $1 million of that windfall.

Brenda Stamp, human resources director at Weleski Transfer in Tarentum, said she was “thrilled” to hear the news about the ALS research breakthrough.

She and Greg Selinger, Weleski’s director of operations, organized their ice bucket challenge in summer 2014. It raised $250.

“It’s everybody’s hope that doing these things and raising money raises awareness and, with the money, that it helps find a cure,” Stamp said. “The hope is always there, but to have that become a realization is truly amazing.”

Hollie Geitner, vice president of client services at WordWrite Communications in Pittsburgh, said the challenge highlighted the positive power of social media.

“It was sort of one of the first times on social media when we saw people nominating other people in some sort of a cause and, by tagging people, it got more people involved,” she said. “You almost felt guilty if you declined to participate. It really forced you in a good way to do just a little bit of research on something they maybe weren’t that familiar with. Up until that point, I did not know what ALS stood for.”

Blasé Urban of South Greensburg, who is in his seventh year living with ALS, took part in an ice bucket challenge in September with fellow members of the Greensburg Salem High School Class of 1978.

“I’m just ready for disappointment, but I’m always encouraged by anything that they’ve come up with,” he said. “They’re still trying, and that’s very encouraging.”

“It costs a lot of money to pay for your care, to stay at home,” he said. “I’m using my own funds.”

Seton Hill University President Mary Finger was among leaders at the Greensburg school who completed an ice bucket challenge that generated about $1,100 for the University of Pittsburgh Center for ALS Research at UPMC Presbyterian. Former President Emerita JoAnne Boyle was treated for ALS at the Pittsburgh facility and succumbed to the disease.

“I think it’s pretty extraordinary when you see almost a direct impact of a fundraising event, with research results happening two years later, Finger said.

Coach Tom Kennedy spearheaded an ice bucket challenge for staff and members of the Greater Latrobe boys soccer team. He said he was inspired to organize the fundraiser as a team-bonding experience during his first year at the helm and because one of his sports heroes was Yankees player Lou Gehrig, one of the most famous people who battled the disease.

“It was the type of thing where we could do something to help a little bit,” Kennedy said of the fundraiser . “I think it helped the kids feel good, and it made me feel good, too.”

Kennedy said he’s encouraged by news that researchers may have discovered a gene linked to the disease. “If they can go in and correct that gene, if they’re not able to prevent it, at least it might help to cure it,” he said.

You are solely responsible for your comments and by using TribLive.com you agree to our
Terms of Service.

We moderate comments. Our goal is to provide substantive commentary for a general readership. By screening submissions, we provide a space where readers can share intelligent and informed commentary that enhances the quality of our news and information.

While most comments will be posted if they are on-topic and not abusive, moderating decisions are subjective. We will make them as carefully and consistently as we can. Because of the volume of reader comments, we cannot review individual moderation decisions with readers.

We value thoughtful comments representing a range of views that make their point quickly and politely. We make an effort to protect discussions from repeated comments either by the same reader or different readers

We follow the same standards for taste as the daily newspaper. A few things we won't tolerate: personal attacks, obscenity, vulgarity, profanity (including expletives and letters followed by dashes), commercial promotion, impersonations, incoherence, proselytizing and SHOUTING. Don't include URLs to Web sites.

We do not edit comments. They are either approved or deleted. We reserve the right to edit a comment that is quoted or excerpted in an article. In this case, we may fix spelling and punctuation.

We welcome strong opinions and criticism of our work, but we don't want comments to become bogged down with discussions of our policies and we will moderate accordingly.

We appreciate it when readers and people quoted in articles or blog posts point out errors of fact or emphasis and will investigate all assertions. But these suggestions should be sent
via e-mail. To avoid distracting other readers, we won't publish comments that suggest a correction. Instead, corrections will be made in a blog post or in an article.